Watching a Meningioma Brain Tumor

Colleen
I am new to the connect mayoclinic group discussion here and I am from Canada
I was diagnosed 12 years ago when I was 41 with a right side parasaginal meningioma that when found was about 2cm however I was symptomatic
I was told to watch and wait and did so for about 6 months but I had little quality of life and was experiencing personality changes
I got angry one day and turned to the web to answer my growing number of questions and fell upon the mayo clinic site
I actually called directly and asked to speak to a Neurologist or Neuro surgeon. My phone number was taken and within a few hours I was called back. Unfortunately I do not remember the name of the neurologist who returned my call but I will be forever grateful
He listened and asked questions and then advised me that if I was uncomfortable with what my Neuro surgeon had suggested to “ watch and wait” then I had every right to ask for a second opinion. He even supplied me the names of three Neuro Surgeons from my hospital here in Canada that I could call and get that second opinion from
I thanked him hung up and made my first call to Dr Hall at the Montreal Neurological Hospital. He took me seriously confirmed I was symptomatic and fast tracked me to surgery
After 7.5 hours of surgery a 6.2 cm (yes it had grown rapidly) grade I tumour was removed that had begun to attach itself to the falix the main artery of the brain which had I continued to “watch and wait” would have made the tumour inoperable
I am forever grateful for the day I finally got angry and landed upon your institution and who provided me sound medical guidance because I am here to talk about it and lived to see my grand daughter come into my world
If a patient is not comfortable with the “watch and wait” approach they should know and be encouraged to get a second opinion this is your life not anyone else’s

Colleen
I am new to the connect mayoclinic group discussion here and I am from Canada
I was diagnosed 12 years ago when I was 41 with a right side parasaginal meningioma that when found was about 2cm however I was symptomatic
I was told to watch and wait and did so for about 6 months but I had little quality of life and was experiencing personality changes
I got angry one day and turned to the web to answer my growing number of questions and fell upon the mayo clinic site
I actually called directly and asked to speak to a Neurologist or Neuro surgeon. My phone number was taken and within a few hours I was called back. Unfortunately I do not remember the name of the neurologist who returned my call but I will be forever grateful
He listened and asked questions and then advised me that if I was uncomfortable with what my Neuro surgeon had suggested to “ watch and wait” then I had every right to ask for a second opinion. He even supplied me the names of three Neuro Surgeons from my hospital here in Canada that I could call and get that second opinion from
I thanked him hung up and made my first call to Dr Hall at the Montreal Neurological Hospital. He took me seriously confirmed I was symptomatic and fast tracked me to surgery
After 7.5 hours of surgery a 6.2 cm (yes it had grown rapidly) grade I tumour was removed that had begun to attach itself to the falix the main artery of the brain which had I continued to “watch and wait” would have made the tumour inoperable
I am forever grateful for the day I finally got angry and landed upon your institution and who provided me sound medical guidance because I am here to talk about it and lived to see my grand daughter come into my world
If a patient is not comfortable with the “watch and wait” approach they should know and be encouraged to get a second opinion this is your life not anyone else’s

Robin, you asked "I am 59 years old and the surgeon has told me I will need to “do something” with my tumor someday since I am younger. What is the benefit of waiting? That is an excellent question. Like Scott says, every person's situation is different. My understanding is watch and wait is recommended when the risk of growth is lower than the risk and/or side effects of treatment. That is a dreadful over simplification. It is better explained here: https://www.braintumour.ca/5833/ask-the-expert-the-wait-and-see-approach

We have several members living with meningioma who have had treatment and others who are under "active surviellance" (my preferred term to watch and wait). Let me bring a few more members into this discussion @eleanor1931seminara1931 @pegorr @lindajean @barbarabx @nancye3 @cnesselroad.

If I were you, I'd ask the surgeon to explain more specifically about the position and rate of growth that may lead to needing surgery later. And if surgery is inevitable, why not sooner?

Man I don't blame you for not wanting your head opened back up. I am a young 66 year old just starting the wait and watch game. I had emergency surgery Sept 27th, 2018. Did 6 weeks of radiation and 6 weeks of tremozolomide. Right now everything looks good even looks like it's backing off a little. I'm doing old Chinese medicine and therapeutic doses of vitamin C IV drip every other week. I will pray yours backs off for good.

Hello - I had a grade 1 benign meningioma tumour removed over a year ago. It was completely removed & determined to be non-cancerous. It'd diagnozed on Oct. 17 in 2013 as a result of my first & only seizure. The NS waanted to operate within 2 days - I believe more because of the edema - than because of the existing benign tumour. Because of extreme fear of craniotomy & not having any time to figure out & realistically look at all options, I simply let each day go by without commiting to surgery. Just couldnt do it. My NS put me on anti-seisure meds & I just got on with my life. It wasnt until April 2017 that I started to have real problems..MRI was done & the tumour has shrunk 10% in size & its shape changed. So I knew I had to go ahead with the surgery. I will not get into the details - I dont want to add any more to your worry. My reason in replying to you is that you MUST ask your NS about the post surgery outcomes & your quality of life! I didnt not - didnt really know ai should ask those ki ds of questions & my bloody NS never, ever told me about the problems I most likely would happen. My head healed well, the tumour was removed successfully but ....
Do as.much research about after-effects & what will be your quality of life & the provlems you will have. it is such a decision to reach. I wish you well!!!!

Robin, you asked "I am 59 years old and the surgeon has told me I will need to “do something” with my tumor someday since I am younger. What is the benefit of waiting? That is an excellent question. Like Scott says, every person's situation is different. My understanding is watch and wait is recommended when the risk of growth is lower than the risk and/or side effects of treatment. That is a dreadful over simplification. It is better explained here: https://www.braintumour.ca/5833/ask-the-expert-the-wait-and-see-approach

We have several members living with meningioma who have had treatment and others who are under "active surviellance" (my preferred term to watch and wait). Let me bring a few more members into this discussion @eleanor1931seminara1931 @pegorr @lindajean @barbarabx @nancye3 @cnesselroad.

If I were you, I'd ask the surgeon to explain more specifically about the position and rate of growth that may lead to needing surgery later. And if surgery is inevitable, why not sooner?